Intestinal Disorders and Failure

Patient Stories | Blayne and Short Bowel Syndrome (SBS)

Blayne Becker, an energetic, happy 2-year-old, enjoys playing with his older brothers, snuggling with his parents and eating mac-n-cheese. 

He’s also a child with short bowel syndrome (SBS).

Born with twisted intestines that had turned black due to lack of blood flow, Blayne arrived at Cincinnati Children’s 12 hours after birth for emergency surgery.

His parents, Christina and Matt, were scared. They had never heard of short bowel syndrome before and were angry that Blayne had to endure such suffering.  

“I was mad. It wasn’t fair. I cried a lot, thinking, ‘my baby doesn’t deserve to go through this.’ I’d never heard of such a thing,” said Christina. 

That’s when they met Michael A. Helmrath, MD, surgical director for the Intestinal Rehabilitation Program. He spoke of priorities, specifically, the importance of saving a portion of Blayne’s bowel. 

“We needed to try and save and then reconstruct bowel that most places would have surgically removed,” said Helmrath. “This is not the time to go into [the specifics of] SBS, other than without having bowel, Blayne would depend on IV nutrition the rest of his life.” 

Multiple Surgeries Needed to Reconstruct GI Tract

The family agreed with the plan, and several other surgeries followed that first one. Helmrath and the team ultimately removed 90% of Blayne’s bowel. 

But by saving a portion of the bowel, the team was able to use the remaining 10% to reconstruct Blayne’s gastrointestinal (GI) tract, using a serial approach which involved a complicated process of several cuts and repairs to his healthy intestine.

“Some areas of repair required repeat surgeries. This is the challenge of caring for patients like Blayne – there is not a one-time easy fix,” Helmrath explained. 

Two years later, the family’s initial anger has been replaced with happiness. Blayne is eating well and making tremendous progress as a patient in the Cincinnati Children's Intestinal Care Center.  

“Our surgeon [Dr. Helmrath] has a special place in our hearts. If not for him, I don’t think that Blayne would be here now. He saved his life,” said Christina. 

Today, Blayne gets a good amount of his nutrition by mouth. However, he also uses a gastrostomy tube and requires a central line for his long-term nutritional needs. As he grows and develops, doctors will remove his central line when appropriate, allowing Blayne even more freedom, including swimming and riding rollercoasters. 

Both his parents and brothers are self-described “thrill seekers,” and they are excited to share their passion for rollercoasters with Blayne one day. But for now, the focus is not on amusement parks, but rather health and continued progress. 

Eating More and More by Mouth, Enjoying Favorite Foods

“It’s huge progress for him to be eating,” said Christina. “Actually, there’s nothing besides fish that he really dislikes. He even loves his vegetables. Peas are his favorite.”

As a parent of a child with short bowel syndrome, Christina said the experience has opened their eyes and helped them understand that life with “short gut” is a marathon, not a sprint.

The family even adopted their own saying: “Short gut, so what!” and had T-shirts created.

Family and online support groups have helped along the way, said Christina, but she also credits Cincinnati Children’s services, such as the speech therapist who came to their home to work with Blayne one-on-one as he touched and sampled different foods. 

Initially, the care team predicted that Blayne wouldn’t eat by mouth until he was 3 years old. But one day, when he was 17 months old, he picked up a french fry, dipped it in ranch dressing and popped it in his mouth. 

“It was so awesome to see,” said Christina. “We would put food in front of him, so he could smell it and touch it and get used to it. But then it just happened one day. He took that french fry and ate it.”

Doing Well, Making Healthy Progress 

Blayne’s primary GI doctor, Stephanie Oliveira, MD, CNSC, is very happy with his progress. 

She notes that complications can sometimes happen for children with short gut syndrome. But given his early prognosis, Blayne is doing much better than expected. 

“Kids like him typically present with several challenges including profuse diarrhea, poor weight gain and liver problems,” said Oliveira. “But Blayne loves to eat by mouth, does not have diarrhea, is growing beautifully and has a very healthy liver.” 

As a patient who is still on IV nutrition, Blayne is seen every four to six weeks for checkups. He also participates in the remote patient monitoring program so his doctors can receive weekly data on him (such as weight and stool output). 

“[Blayne] is fully potty trained, which is one of the hardest things to achieve as a short gut kid this early,” said Oliveira. “He is growing, thriving, developing and relying less on IV nutrition.” 

Plus, eating and playing – each day from 11 am to 8 pm – completely disconnected from his IV line. 

“He can run and jump and play, free of lines and tubes,” said Christina. “His trampoline is one of his favorite things to play on. He does front flips and all kinds of stuff.” 

And while Blayne perfects his bouncing somersaults, his parents have become experts in his management at home. At night, his parents hook him up to three different pumps to administer his needed nutrition, fats and formula. 

“It’s just natural now to hook him up at night and get all the meds and mix them up,” said Christina, describing their nightly routine. “You either do it or don’t do it. And in this case – to keep your child alive or not – we would do anything we could.”

(Published January 2022)